Hi! Diagnosed 4 years ago with Lim Cut Syst Scler. My grip is not as good as it used to be. I'll think I am holding something and it will slide or fly out of my hand. Worse in the mornings. And yep, my hands get tired sooner than they should. I may scrub a couple of pots, but then can't scrub the sink until I rest for awhile. I've mentioned it to my doc, who says, "Hmmm" LOL

I have synovitis in my knee right now and the ortho put me on liquid diclofenac (anti-inflammatory med in USA) that I apply to the joint. Helping. Has been 5 days and I can turn knee now without a curse word flying spontaneously out of my mouth.

It is so good to hear other people having the same experiences. Some mornings I think I am losing my mind as my hair blow dryer flies out of my hand or the milk carton slides through to the floor. Thanks for sharing!

I have the same problem. My grip is unpredictable, and my hands, wrists and arms ache. I use a travel hair dryer now because it's so much lighter, nightmare with long hair though! It's comforting to realise that you're not the only one 😊

It really is. I spent 25 years as an Oncology Clinical Nurse Specialist, making sure I gave anticipatory guidance to all my patients as to what to expect with their various cancers, organ involvement, treatment effects, and so on. Even with rare cancers or syndromes, I worked to give them all the best information and support. With systemic sclerosis and other uncommon autoimmune disorders, the lack of knowledge among healthcare providers is astounding. I have been directed to generic books or websites that do not bother to discriminate between sub-types and differing experiences. Grrr. Makes a person feel abandoned at times!

It's really interesting to read everyone else's experiences. There seems to be so much that is very personal to each of us and there's no way to know how you'll be affected. I'm a veterinary nurse and was finding basic duties more and more difficult and just wanted information on what to expect etc. The Dr at the hospital is very understanding but unfortunately not full of answers. Now I'm trying to just go with the flow lol😬

Yes! In the beginning I would have these little moments of terror, wondering what was going to happen, or would I become seriously disabled. Those moments are less frequent now, a few years in, but when an inability to hold something or do something happens unexpectedly it takes me by surprise again. You are wise to "go with the flow!"

Thank you all for your replies, I'm seeing my rheumatologist on the 17th March. I'm worried my fingers might stop working haha they feel like when you have been out in the cold for hours and it's difficult to move.

I haven't had a confirmed diagnosis for raynauds and scleroderma as of yet but I have pictures of an attack to show them.

I too have severe pain in my hands, and somedays they will just not work! I have also become very clumsy! Scleroderma and Raynauds have a lot to answer for, than goodness for my wheatie bag I find that indispensable. Take care x

Yep...same here.....Systemic sclerosis ....hands swell up too. Mainly my right hand for some weird reason which is the worst affected but my feet and leg goes numb too...but I have spinal problem...fractures and bend in my vertebrae...so maybe this is why on this one. Exhaustion too after doing the slightest exercise... and hot sweats intermittently..again after slight exertion. Flipping annoying! Can't even throw a down duvet over my bed in the morning without collapsing onto the top of it after doing so.

Me too. I use a hand hot lavender wax bath. It really helps me. Not too dear in ebay. It comes with wax and just melt it. Do one hand a time. put your hand in the bags and glove cover then do the same with the other hand. Sit and wait for the relief and it peels off. I put it back in the bath for next time. I set all the plastic bags opened up so I can slide my hands in. I change the wax after a couple of treatments.

Yes, I have the same problems. I have a definite diagnosis of Secondary Raynaud's. There's a bit of osteo there, too. Rheumy sent me to Occupational Heath where I was fitted with hand braces. These are very odd because they fix my wrist and palm, taking the strain off the fingers. I don't wear them too often these days because physio says I could lose grip in my hands. What grip lol? When they are very cold it's impossible to do more than fumble anyway.

No meds suitable because of familial low blood pressure. I use the usual warming methods, and have some sort of capsicain cream prescribed - not available in this "dose" OTC for pain. I have yet to work out how to apply it then wait 30 mins without touching my cold runny nose by accident, before I can wash my hands.

As my name indicates, I'm an obsessive knitter, which can help circulation and Occ Health says is perfect for keeping the hands moving. Dreading the day when it might be too difficult. No more handmade socks that fit my cold feet perfectly!

Hi, I have Raynauds and my hands are cold, stiff and achey. They also sometimes go dead and pins and needley i find this very off putting in the early hours and worry in case the feeling doesn't come back. My own fault today though, the suns shining and i forgot my gloves